At 16:56 1999/08/01 EDT, you wrote:
>Hello All:  My PWP needs more info to overcome some difficulties
>he has run into into in 3 areas of his life.  I will keep it brief
>but will appreciate any feedback on these topics, even offlist,

shucks
i know everyone has different needs in re privacy
but i just don't like to see this 'offlist' suggestion
since we're 'supposed to be' an information exchange...
the questions and answers we get and give
aren't just for us and just for now...
they are for others coming along digging in the archives later
looking for help
but enuff...

>since we have his six month rendezvous with the Neuro.& primary care
>doctor at the V.A. on 8/5 (30 min. with each- I want to be prepared!).

superb idea!
taking a list of written questions is good as well
you two are the 'customers', and deserve the best 'service' possible

>First,  he has been on Bromocriptine with his Sinimet 200Cr the past
>six months-experiencing dyskinesia and increasing, intermittent
>freezing and slowness. ...

why did he go onto bromocriptine?
were his meds becoming less effective then?

the on/off effect of swinging
from dyskinesia [overmedicated] to 'slowness' or bradykinesia [undermedicated]
is the biggest problem to address in re sinemet/levodopa management
and sensitivity to same as pd progresses

this is where the 'low and slow' fine tuning starts to become critical

at this point a lot of parkies on regular sinemet would have their med dosages
changed so that they are taking half the dose but twice as often
but i'm not sure how that would wash with someone on sinemet cr

i [with my neuro] 'fine-tuned' my sinemet intake in that way
two different times over the course of about five years
which is how i got down to 1/2-10/100 sinemet every 90 minutes

you describe
six months of movement fluctuation problems
and six months of vision problems
and maybe a gradual increase in ejaculation problems
and i'm starting to wonder
if bromocriptine is just plain not 'working' for him
everyone reacts differently, etc etc

>We've been thinking about going to a more modern agonist-
>perhaps Mirapex or Requip - been watching all correspondence about them-
>hope to minimize the Sinimet with best aid against the bradykinesia
>(slowness, lack of energy)...

this sounds to me like a plain undermedicated state
but if it's regularly sandwiched between periods of dyskinesia
you have the on/off phenomenon

mirapex [pramipexole] and requip [ropinirole]
are non-ergot derivatives
[ask your neuro to tell you what that means!]
different from earlier dopamine agonists
and with fewer negative side effects apparently

i can get into on/off fluctuations in a big way now
if i don't watch the clock like a hawk
and after looking at all the med options available last summer
me and my neuro decided to go with a comt inhibitor
instead of a dopamine agonist, ergot or non-ergot
[ask your neuro if he can figure out why!]
thus my prescription for tasmar [tolcapone] [un-used]
and thus my patient wait for comtess? [entacapone] [later this year maybe]

>What advice, exper. can anyone give, perhaps
>comparing the benefits/side effects of these two meds?
>Second, he has had serious deterioration of his eyesight during the
>past six months- poor depth perception and coordination problems- has
>had reading difficulties for some time ...

longer than six months?

>but now seems to have invaded his ability to accomplish hand/eye
>coordination tasks.  There has been discussions about the eye possibly
>contributing to walking problems - which we feel is highly likely -
>but is there any eye specialists available to give specific answers
>related to PD, the meds side effects on eyesight, etc?  Some time
>back there was discussion about eyesight and some were going to a
>conference  for eye doctors specializing in neuro. disorders, but I
>didn't see any subsequent info. on the event (in Dallas,I think).
>Has anyone encountered any specialists in this area  within the V.A.
>system for the Houston, Austin area?...

when last did he have his eyes examined?
or his prescription changed? [assuming he wears glasses or contacts]
be wary of attributing all symptoms to pd
[although the six month time frame looks connected to bromocriptine]

>Thirdly,  this is a tricky one to talk about, but impacts his life
>enough to need some experienced answers if possible.  His sex life and
>health is fine in all areas, except one for the past few weeks - final
>ejaculation - and he needs relief......At his age, the tendency is to
>blame all on the prostate - which he is being nudged toward a prostate
>exam- which he is resisting on the grounds that his urination is
>fine, and he feels in tune with his body enough to know when assistance
>is needed for a realized problem (he met some real unhappy prostate
>patiants when getting his hernia repairs several years ago).   He is now
>taking a saw palmetto/zinc otc supplement, but wonders if anyone has
>suggestions of where to look for the possibilities of other sources of
>the problem in this area.......

how long has he been taking the supplement?
have there been any other changes in lifestyle, diet, sleep habits etc?
is the ejaculation problem sudden or did it develop slowly?
[like maybe over 6 months?]
or is it connected to his dyskinetic or bradykinetic state in any way?
[both states will prevent my reaching orgasm, guaranteed]

>Now that he has been contending with PD for l3 yr., we are most grateful
>to be able to "be in touch" with people with practical experience and he
>wants to stay armed with knowledge as much as he can to avoid the perils
>of "misguidance" that can occur in the medical field....

absolutely!
my cyber hat is off to both of you!

>We feel the discussions in this setting are invaluable for doing our
>best in handling this damnable condition.  Now that he is experiencing
>dyskinesia and slower movement complications we also intend to investigate
>the possibilities of locating a movement disorder specialist within the
>V.A. system? Does anyone know of such a  "critter"? ...

there are neuros
and there are neuros

there are movement disorder specialists
and there are movement disorder specialists

no guarantees anywhere, apparently

imho
the important thing is to have someone you are both comfortable with
someone who responds positively to your 'self-advocacy'
and someone who keeps up to date

if that someone also has lots of happy parkie patients
then you are home free!
[maybe]

>Thanks for your time -
>look forward to your replies!
>Marie      carepartner for husband (70/l3)


i hope this was worth the suspense!

janet

janet paterson
52 now / 41 dx / 37 onset
snail-mail: PO Box 171  Almonte  Ontario  K0A 1A0  Canada
website: a new voice <http://www.geocities.com/SoHo/Village/6263/>
e-mail: <[log in to unmask]>